Developing an Intervention to Improve Informed Decision-Making for Oncology Patients in South Africa

Abstract

Introduction Patients making cancer treatment decisions face several challenges including grappling with difficult terminology and deliberating different options based on the information provided and their own values while experiencing high levels of stress. Informed cancer decision making by South African patients in the public healthcare sector, is further complicated by the constrained resources in the oncology clinics limiting the time available for consultations with the oncologists. Language and socio-cultural barriers impact on the patient’s ability to make fully informed treatment decisions, which are legally and ethically required. While decision aids (DAs) exist in high income countries (HICs) to assist patients to make informed cancer treatment decisions, there are no studies reporting the development of cancer treatment DAs in South Africa. Aim The aim of this thesis was to develop a decision support intervention (DESI) to improve cancer patient informed treatment decision making. Methods This thesis applied the Intervention Mapping (IM) framework to the development of the DESI. The three objectives of the thesis related to the first step of the IM process namely a needs assessment to develop the logic model of the problem. The first objective was to assess the effectiveness of decision aids (DAs) in addressing vulnerable patient-reported decision needs by conducting a mixed methods systematic review to understand the synergies and gaps between the DAs and the patients’ needs. For the second objective a quantitative study was undertaken to measure the South African patient’s health literacy (HL), factors associated with HL, their decision control preferences (DCPs), and to assess their decision needs. The study enrolled 124 patients diagnosed with cancer at three tertiary level oncology clinics in South Africa (two in Gauteng and one in KwaZulu Natal). For the third objective a qualitative study was undertaken to understand the patient experiences of making cancer treatment decisions and the oncology staff perceptions of the decision- making process. In-depth interviews with 30 patients and eight focus groups with oncology staff were conducted at the same clinical sites as the quantitative study. The results of the XVII three studies were triangulated to provide a logic model of the problem which informed the next steps of the IM process, resulting in an evidence-based theory driven intervention program. Results The systematic review identified significant gaps between the DAs and the vulnerable patients’ decision support needs, particularly relating to communication in the consultation and providing counselling and coaching support for decision-making. The 124 South African patients at the study sites in Gauteng and KwaZulu Natal had mostly marginal (69%) to limited (11%) health literacy, positively associated with their level of education (OR 2.2, 95% CI 0.58 – 8.55 for high school and OR 14.6 95% CI 2.2 – 96.61 for tertiary education) and socio-economic status (OR 4.1, 95% CI 1.03 - 15.98, for the wealthiest tertile). The patients reported high information needs (71%) despite reporting understanding a lot of what the doctors explained (77%) and feeling comfortable a lot, asking questions (82%) in the consultation. Most patients (82%) preferred an active decision-making role. The qualitative study findings confirmed the high levels of information needs, but most patients did not ask questions in the consultation and often played a passive role in decision-making. Language and cultural differences between the patients and the oncologists were identified by oncology staff as major barriers to informed decision-making, and support from the patients’ families, the oncology nurses and the palliative care teams addressed some of the patients’ decision needs. Following the logical, iterative process of the IM framework a locally relevant decision support intervention program was developed. Conclusion Patients have high levels of cancer and treatment information needs and wish to be active participants in their treatment decision making yet often lack the self-efficacy to engage in treatment deliberation with their oncologists. Language and cultural discordance between the patient and oncologist compounded by the time pressures of the clinic, are barriers to effective patient-centred communication in the consultation. It is vital that adequate training is provided to oncologists to improve culturally sensitive patient-centred communication when supporting cancer patients to make informed treatment decisions.